Im worried that ive got permanent nerve damage. I wake up with numb hands then spend the day shaking them out, or feeling stabbing sensations in my limbs, and almost constant tingling in my hands, the tips feel different. I have been self injecting 1 a week for the past month, but my nerves if anything feel worse? I also having anxiety that if i havent got a full pernicious anemia diagnosis maybe i am giving myself too much B12 and causing myself issues.
I definitely had a deficiency with neurological symptoms diagnosed last summer (levels were 150ish) and my aunt has PA diagnosed. I had the IFAB and it came back negative. Peripheral neuropathy symptoms began in 2021 then a slow and gradual decline into feeling like i was actually going to die. The nerve issues kind of improved after the loading dose. Since August 22 ive had the 6 loading doses, 3 once a month injections (As part of a trial to see if this helped) and then i've done 3 self injections so thats only 12 shots. You can probably tell im just processing things here. 12 shots to heal a significant deficiency isnt much.
I spoke with my GP today to review the trial. As i dont have a PA diagnosis they arent really taking me v seriously. I just questioned how they can arrive at the conclusion that 1 injection a month for 3 months will help with my neurological symtpoms when NICE guidelines suggest 1 every other day. There wasnt really much of an answer other than -"we're taking guidance from haematology" thats is what they say will be sufficient. And again i posed the question, but how can they say that. never the less, its not fully worked anyway. Fair play have 1 a month for 3 months has helped me feel better cause i was legit dying, falling over, out of breath, couldnt talk etc. Anyway, i said all this and shes like. So in your eyes the trial has been successful and so we will re-instate injections lowered down to once every 3 months! I was like yep okay. yes that makes sense. Ive not got it in me to fight this as i am self-injecting anyway. but still what kind of a joke is this. and shes the best doctor ive had out of all of them dealing with this. its so bad!!!!!
ANY TIPS for nerve damage ANY HOPE you can offer please
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ozwald28
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But your GP should know that about 50 % of Pernicious Anaemia patients test negative to the Intrinsic Factor Antibodies test ( IFAB) Our Chairman Martyn Hooper , had to test 3 times before he got a positive result . . A positive trst is definite proof of P.A. A negative test does NOT rule out P.A Your symptoms are the indication of P.A.
Also the genetic link of your aunt’s P.A. is another important sign .
You need every other day injections till. no improvement occurs . If you cannot get this from your GP , then I suggest self injecting like so many of us on the forum are forced to do Time is of the essence . . It is simple and reasonably cheap . . Well no more than a cup of coffee in a café.
Got a feeling you do not have PA, as the presence of parietal cell antibodies is the definitive proof of this condition. Further a level of 150 is considered OK for most people. So suggest you may have another different issue. In my case I am currently in a reticular testing regime to see what I need to have. My latest test was 50 so I need to have another round of loading doses. In respect of nerve damage, When my B12 was very low I had a numb patch on my upper thigh. After the B12 injections that slowly reversed itself. Further my vision seemed to improve a bit (not sure if that was my imagination). So my suggestion is that you need to see a medical professional - perhaps a different one?
Hi, I've not been tested for parietal cell anti bodies. 150 is not OK haha I'm not sure how anyone could be OK with that i was absolutely dying. In Japan anything less than 500 is considered a deficiency. I dont think you should tell people a level of 150 is OK for most people when its not. GP said they are treating me for a functional deficiency as i was taking b12 supplements and still became deficient. I am waiting to see neurologist about the nerve issues for testing but GP said not sure on wait times 🤔
Well, this is what makes this forum so useful. Here I am learning about all sorts of things. I do have a family history of PA and have acquired other genetic disorders, lucky me, and when first looked at my doctor had never seen a test result quite so low, however I don't suffer from any of the extreme symptoms described here. So this is why I wonder that some people may have other trouble (as well??) Of course I happen to live in New Zealand where the health system is "third world" as opposed to US or UK where medical training and knowledge is more pertinent. Which is, I suppose, if you have ongoing trouble that isn't getting any better, a good idea to go to another medical professional who may have a completely different take on the situation and treatment regime.
I think that you have messaged the wrong person . I do have PA ( positive Intrinsic Antibodies) I do not believe that 150 is a satisfactory reading for B12 blood serum level . Especially when you realise that up to 80 % of that level can consist of B12 that cannot be used by the body .
150 is very low can be very damaging. I would add that it depends on the specific lab one is using and anytime one posts results they should also post the normal ranges for that lab for instance I'm in the US and use LabCorp where the normal range is 232-1245 pg/mL.
Regarding Parietal Cell Antibodies (PCAB) versus Intrinsic Factor Antibodies (IFAB). The IFAB are more specific to PA. So if IFAB is positive, along with other symptoms, then you most likely have PA if they are negative it does not rule out PA. PCAB is less specific to PA. Although, 90% of people with PA will test positive for PCAB there are other conditions that also test positive for PCAB such as, Diabetes, Gastric ulcer, and Thyroid disease. So a positive test of PCAB by itself is not diagnostic of PA. Here in the US they typically perform both tests. If you test positive for both or one or the other and you've associated symptoms then that is considered diagnostic for PA. Personally I tested positive for PCAB and negative for IFAB. What is perfectly diagnostic for PA, in the absence of IFAB is a positive PCAB and high level of serum Gastrin (with low or no stomach acid, Gastrin levels will be high). My Gastrin levels were tested at over 1,000 with a normal range being 0-115 pg/mL.
This is helpful, the GP refused to refer for a GPAB test as its not specific to PA enough. I may need to go private for this one as the NHS is just not equipped and completely at this point, crumbling. Though, i resigned myself to just having an unspecified issue with B12 and not get hung up on the cause, i have luckily the knowledge i had low B12 and in other countries they treat this much more fastidiously and seriously than in the UK. If im not gettinng the right amount for my body to fully recover, i will need to take this into my own hands. Ive decided to follow the netherlands protocol and take 2 injections a week for the next 2 years. If they offer it there it is not dangerous and if i lived there that is what they'd do for me regardless of the cause. After 2 years, I will move to oral tablets and see how i feel. I don't see the point of going through any diagnostic testing for PA anymore as if i am S/I will this skew the results of any further tests such as the GPAB and gastrin etc?
I would highly recommend anyone with a suspicion of having PA to get a confirmed diagnosis. As I say in PA "IT AINT JUST B12". This goes against what most doctors or GP are taught. Even the definition of PA skirts around the other major issues that occur when your Parietal Cells are being destroyed. PCs not only secrete IF but also contain the proton pumps that secrete stomach acid (hydrochloric acid). Hence the high gastrin levels. low to no stomach acid cause a whole host of digestive issues, from acid reflux (oh yes I was prescribed a PPI for that) no longer taking it. to SIBO, IBS, constipation, Gallstones etc. Not to mention a 3 to 7 times higher risk of stomach cancer. I know this as I've been lucky enough to have all of it. Thank God they found the cancer early so they just excised it. Now I have a cancer screening endoscopy (you call it Gastroscopy) every six months. My point is, if one truly has PA then it is so important to know so you can be aware and manage all these things. I have no stomach acid, ZERO. I had it measured during an endoscopy and PH was 6. So yes, my strong recommendation is to either get it confirmed that you do or don't have PA. If you don't then find out why your B12 is low. PA is fairly rare about .1% of the population has it. Doctors and GPs get little training on nutrition. One of my doctors told me he thought he maybe got 30 minutes of B12 training in med school so they are clueless and it's not their fault. What is their fault is their inability to ditch their own arrogance and listen and learn from a patient.
Yes, it will skew tests. Depends on the test though. For sure B12 for a PCAB test. Another one is Biotin. Some labs have patient prep requirements on their websites. Example the one I use in US is LabCorp... here's what is says for IFAB patient prep.
Patient Preparation: No specimen should be collected from a patient currently undergoing B12 therapy less than one week after the last B12 injection.
I'm not sure, if you are in UK, what labs you use. But I would just stop all supplementation both orally and injections for 2 weeks prior to a blood draw just to be sure. I do this as a matter of practice myself anyway.
OUCH! that is insanely too long! I think I would be in that same situation if I had not been trained and experience with root cause analysis while investigating missile failures. My doctors just told me I couldn't absorb B12 and just I needed B12 injections for life. That was it. Fortunately I was curious and started asking questions, why? why? why?. Otherwise I would not have made it to the ten year average but rather I would literally be dead as I was just withering away even with B12 injections due to all the non-B12 issues of achlorhydria. I do like to remind people that although this condition is perfectly manageable it is also serious if not managed. The "Pernicious" in Pernicious Anemia is alive and well even today. Is there someplace I can find the results of that survey??
14% of those (all eventually with PA diagnoses) involved in the survey waited over 10 years for a diagnosis. This PAS survey, published in 2014, was completed by 889 UK members.
Rexz : This information can be found in Martyn Hooper's book "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency". Also under Topics heading - at the end of the right hand column of this page - in all things Pernicious Anaemia , you can see a poll taken about how often people need to inject.
For those who have a functional B12 deficiency where B12 cannot reach cell/tissue level, M R Turner and K Talbot (2009) believe that ".... patients may respond to repeated high-dose injections of B12". There is very little in the way of research, and this may sound quite vague, but I have found that this is the best way to keep B12 deficiency symptoms under control for me.
I've read that about 10% of people with PA do not have parietal cell antibodies (PCA) and about 50% of people with PA do not have intrinsic factor antibodies (IFA).
Sleepybunny, Yes, 90% of people with PA will test positive for PCAB or inversely 10% do not test positive.
I have read the the IFAB test the sensitivity of that test is tuned down to to increase the specificity to a PA diagnosis which make sense. If they loosened the sensitivity there would be false positives. Based on what I've gathered from my research I "believe" that everyone with PA may have both PCAB and IFAB they are just not showing up positive on tests. I must stress that although I've looked I've found no paper that directly addresses this.
Regarding the B12 reference range, one must really know the range of the specific labs they are using. It depends on the methods they are using and their own references. Here are a few examples.
The one I use in US LabCorp the range is 232 - 1245 pg/mL.
Then there is New Zealand that uses picomole per liter (pmol/L) here's example. NZ normal reference range is 170 - 600 pmol/L a completely different reference range.
Hi nackapan, I've increased my S/I but I have anxiety. Can this cause low potassium ? I am having a muscle spasm in my arm pop up out of the blue today. I'm going to make a point of eating more potassium rich food without going overboard of course. God my health anxiety I'd quote immobilising particularly when I actually have real symptoms
Hi There, I also have numb hands. Tingling & then numbness. It gets worse at night when I am trying to sleep. Bit of a joke at the moment. Seeing a doctor is a challenge in the UK at present but general consensus is that I have Carpal Tunnel Syndrome. I self inject B12 once a month & find it helpful/amazing. I have no other symptoms & hope you receive the correct help & diagnosis very soon. I am having problems buying B12 ampoules as Germany won't deliver to the UK. Any ideas on that? All the Best Louise
wedgewood would you mind offering your amazing advice about S/I I know your list of pharmacies is where I was finally able to secure myself some from - it took 2 attempts-and it does feel intense buying this to self inject but it is worth it
Hey, I am very sorry your going through this and you are suffering from the lack of understanding from your GP.
You can complain to the manager of your GP surgery.
I do recommend that you get a refural to an endocrinologist, they can look through your b12, iron and hormones and vitamins.
I got my diagnosis from an endocrinologist and I suffer with low b12 with PA. If I have any issues, I can contact them about my GP denying that I need b12 injection and they will back you up or write to your GP.
From experience I have issues with my b12 and other low vitamins such as folic acid, vit c, vit D and hormonal levels which sums up most of the symptoms I had and what you were talking about. It may not be just your b12 at play it could be a variety of things so I would ask for that refferal to make sure. I'm not medical trained in anyway but from the bottomless pit I was left in many years ago I hope I can help others by suggestions and information.
Thanks ! i will have to enquire about the endocrinologist - i am currently in the process of changing GP practice and this will be a few weeks as my last GP sent these referrals then told me to wait a few weeks for them to go through and then change practice so thats what im doing, hopefully don'nt need an ything in the mean time lol. Im tempted to go private for this now x
self inject every other day - you will get better - put your energy into that - I gave up with my GP - you need to get well not take on their ignorance and unwillingness to folllow NICE guidelines! Good luck - it’s nerve wracking at first - 2 1/2 years on and I feel great! Still doing EOD!
YAY Claire!! We all need to understand that each of us individually is responsible for our own health. It is a hard reality but is is the truth. If I had listened to my US doctors I would be dead right now. Doctors and GPs look at you, not as an individual, but rather as statistic. Don't let yourself become a statistic. Even the NICE guidelines is geared around statistics and averages. Feel your own body and get to know it...now that was new to me! LOL I didn't give a crap about my body all my life...so it was a big learning experience for me. But it saved my life. OK that's a rambling diatribe but I think just maybe, good advice.
Check if you have carpal tunnel syndrome (CTS) The symptoms of carpal tunnel syndrome include: an ache or pain in your fingers, hand or arm numb hands tingling or pins and needles a weak thumb or difficulty gripping These symptoms often start slowly and come and go. They're usually worse at night.
Thanks, I thought I had CTS before anything else and spoke to a physio at my GP practice who said it would be rare for me to develop it suddenly in both hands spontaneously and said i needed blood tests, that's how we discovered I had low b12. I also think because it is in my feet and legs it may not be CTS and the numbness is in my entire hands not accompanied by pain necessarily but I will deffo look into it again thank you 😊
I am sorry that we live in a world where Doctors do not receive training on nutrition and see it as a lower tier nuisance. The majority do not have the first idea of the impact it can have nor do the general public at large. GPs follow the rules and get you injected, get your levels up, then what? Nothing. Because they believe thr 'jobs done'. Any further requests means the patient must have health anxiety and 'we're seeing alot of that at the moment' said my GP.
Or are you maybe seeing alot of patients you can't treat because you don't know how to?
Unfortunately the GPs will be of no further help. Not enough to get you well. Intuitively I think you know what you need, its just the hurdle of the thought of self injection that's stopping you.
Take your time to source the right ampoules, injection kit, and think through your process. Will you inject arms or thighs? Or maybe subcut?
The only way to heal your pins and needles is with every other day injections for at least 6 months.
I think i figured out why i feel so weird about giving myself the injections despite knowing its what i need. I have been medically gaslit for so many years for being a) a woman b) with a mental health and autism diagnosis c) young. I am rarely taken seriously for anything and if i am, its soon explained away by my mental illness, or im too young to be dealing with XYZ. I think whats happening is i am avoiding giving myself the injections because im worried im being dramatic and i don't really need them, and im just causing a fuss over nothing.
I had exactly the same thoughts. TBH my worst symptoms were psychiatric. I started losing touch with reality and thought the physical symptoms were 'in my head' because it came on pretty heavy. And even the GP couldn't get it for a while.
But you do need it. And the beauty is that you can't have too much. Some reports suggest we need to inject twice weekly for up to 2 years post-loading doses. This gives us the best chance to recover.
In the Netherlands they offer this. Their medical system is better. My wife is European and before she moved to this country her GP asked 'will you go private in the UK? Because when we attend conferences to update our knowledge we never see UK delegates there. And we know that the healthcare is not good in NHS.'
And they can say that because they have something to compare it too. In the UK we are land locked, and assume we have the best of everything. We dont. The NHS will leave you do suffer unless you're dying. And be swift to treat you as someone with health anxiety, even though few of them have studied mental health. So how could they diagnose something by sight?
You do need EOD injections and when you start doing them you'll be less anxious. Just be careful to rotate your injection sites. Good luck
thank you, i have decided to take up this treatment plan 2 per week for 2 years, i think my neurological symptoms have deffo improved i.e. the balance issues, the word finding but the nerves are the last thing left to treat. i am happy to go with 2 per week as every other day feels too much for my muscles as i have 2ml ampuoles and have to use my thigh for that.
Yes, 2ml every other day may be too much for the muscles. Twice a week, spaced out to, say, Monday and Thursday first thing in the morning will keep the levels high. You could also consider sublingual - I take about 10,000mcg methyl/adenosyl every day alongside a weekly Hyrdoxocobalamin injection. My arms can't take more than that after years of doing it.
Try twice a week for the month of Feb and see how you are after that. I really hope it lifts your mood and anxieties. It's all linked to the gut - our mental health is dependent on a good gut. So try to eat well, sleep well, reduce stress (not easy!) and try probiotics too if you can. Give your gut nourishment and a good balance of meats, veggies, nuts and seeds and fruits for fiber.
NHS is just a lost cause for help with gut or B12 issues. It's a scandal that we all have to suffer like this. Even ancient wisdom says 'all disease begins in the gut' yet we've chosen to ignore this fact because it doesn't fit with our segregated learning styles.
BUT...we CAN look after ourselves and heal. We can. So do good to yourself and stay hopeful. You will get better.
Yes, and in different legs it would be 1 a week per leg so thats not too bad. I'm hoping to find some 1ml ampuoles, but i cant inject into my own deltoid anyway. Im taking a superfood supplement of 8 medicinal mushrooms too, i hope this will help with energy, mental clarity, immunity etc etc.
ozwald28 - I am also A) a woman B) have significant mental health issues, and C) am also young. Your description of doubting yourself and worrying that you're "just being dramatic" sounds like my experience to the T.
It can be incredibly hard to face reality clearly when the people around you who are supposed to be helpful and supportive are essentially in denial because they can't cope with what's actually happening. You are so strong and brave. I want to give you the biggest hug and send a huge dose of confidence to you!!! I believe you can and should trust yourself in this matter.
You're right. You have been gaslit. It's nothing to do with who you are, despite any stereotypes that may have been projected on you. It's all about the unwillingness and insecurity of the western medical profession in regards to knowing and doing what's best for individual patients, and their arrogance in not knowing basic/foundational nutritional truths. Cheering for you!!!
it might be a good idea to ask for a referral to a neurologist. Clearly you had low b12 levels but that doesn’t mean there isn’t something else going on as well. Ideally you should have nerve conduction tests to see if your large nerves are damaged or whether it’s your small fibre nerves causing the symptoms. Also brain and spinal mri scans to check for disc problems etc.
Thanks, my GP has referred me for nerve conduction testing and is uncertain of wait times for that. i have no idea what this entails! Scared of bigger scans like brain and spinal MRI's, but it seems a thorough investigation would help identify issues. Seems here in the UK you dont get a thorough investigation for anything anymore.
unfortunately, you have to push for thorough care which is hard to do when you are unwell. I would ask to go on the waiting list for a neurologist as it could be up to a year. I have had nerve conduction tests- nothing to be worried about, easily done, doesn’t take long. I’ve had brain and spinal mris. Doesn’t hurt, they would usually do them separately so not in the mri scanner for so long. I have no problem having mris . It’s just a bit boring! But I know some people find it a bit claustrophobic but really it’s no problem at all. If you get the opportunity just get it done so you can rule things out. Basically it enabled my neurologist to rule out intervertebral disc problems, spinal degeneration, MS for the moment and told me that it’s just my small fibre nerves causing my neuropathy. Although he couldn’t give me a definite cause at least I knew my large nerves weren’t damaged which was very reassuring to know. Small fibre nerve damage is the best outcome I could have hoped for. Has your GP also ruled out diabetes and checked your iron levels?
Hi, so glad you got that thorough exam! Im hoping because im referred for nerve tests the neurologist will also press for further tests, though, hopefully, by the time i see them in however long it takes for the referral to through, the increased b12 i'll be S/I'ng will have improved the nerve issues (Thats best case!) I have had recent bloods and all were fine including diabetes and iron which is great. I do take iron, folate + vit D supplement
" I have been self injecting 1 a week for the past month, but my nerves if anything feel worse? I also having anxiety that if i havent got a full pernicious anemia diagnosis maybe i am giving myself too much B12 and causing myself issues."
Thats how it works. As more B12 arrives the repair of the damaged myelin sheath that protects your nerves kicks in. Damage which you didnt feel before because of damaged nerves now starts to be felt as the nerves start to transmit properly again. Nerve repair is extremely slow. I felt everything you mention. It just takes time, but as others mentioned, once a week may be inadequate, I would consider at least twice a week which is the standard for neurological damage in some European countries, or every other day until no further improvement in symptoms.
It can be disheartening to receive something which you expected to alleviate symptoms but initially makes you feel worse instead of better but the process is normal and expected. You cannot damage your nerves with too much B12, if you don't believe me, try to find a paper that describes nerve damage from B12 supplementation or injections. There is none because its not possible. You are just feeling damage you didnt before because the nerves are transmitting signals better. Nerve regrowth after damage is at 1mm a day. With extensive damage this repair can take a long time. It sometimes feels like nothing is improving in early days. But get enough B12 along with good nutrition, rest, sleep and gentle movement and you WILL see improvements. Your mood stability will improve too,this also took 4-5 months for me.
thanks so much for your reassurance. I am going to take 2 injections a week for 2 years ive made my mind up i absolutely HAVE to. Cant believe the NHS is as bad as it is i know its free at point of use, but you get what you pay for (we do pay tax obviously) but unless youre literally dying infront of their eyes they dont have the capacity to meet everyone's needs unfortunately. Its been systematically de-funded and now we are on our last legs as a nation with our health care.
I note your quote from them :""we're taking guidance from haematology""
Well, the problem here is that a B12 deficiency is not just or only a haematology issue. Blood levels of B12 will come up to and over range pretty quickly once injections start. But this doesnt mean the problem is solved and you can now wait for B12 levels to come down again before any issues arise. Red blood cell replacement takes several months. Nerve repair, months to years. Most of those with PA need to keep levels very high over a long period to keep symptoms at bay and continue neurological repair. It is not known precisely why this is the case.
Even retired physicians with PA have written into medical journals backing up the need for more frequent B12 injections than is seemingly needed from blood results. Partly this may be due to the broken B12 reabsorption mechanism in PA. There may be other factors- more research is needed but the situation is clear. There are many hundreds or more PA patients who experience the same return of symptoms despite highly elevated B12 serum levels. Its not plausible to me that all these individuals are injecting for only placebo effect.
Expert research centres on B12 such as B12 Institute Netherlands are clear that testing B12 serum levels after treatment starts, or using such levels as a basis for treatment frequency is not justified by the clinical evidence of how patients respond in the field. I think eventually, the science will catch up and we will begin to understand the full reasons for this phenomenon. But in the meantime, life and good health is in the balance and its not possible to wait for the answers while withholding B12 when its needed.
I honestly think most doctors are trying to do the right thing but they are hampered by their generally poor understanding of nutrition and B12 and the complex and unreliable nature of B12 testing and treatment for deficiency. There is also the contribution of pharmaceutical industry funding or influence. How easy is it to get an SSRI (antidepressant) or Benzodiazapene prescription despite the serious side affects and withdrawal issues involved with these drugs. Despite the expense of these drugs in comparison to super-cheap and harmless at any dose B12?
They are also fiends for sticking to inappropriate protocols maybe in fear of litigation? I feel like most would prefer to stick to some protocol and watch a patients health decline than rethink or go outside the protocols/guidelines. Of course there are the actual bad eggs out there, we've all met a few!
They also do not have much time with patients - usually not enough to dig into the 20+ symptoms you might have as a result of B12 deficiency. In theory they are supposed to be looking for root cause analysis but in practice, most do not. Their training prepares them more adequately for single symptom diagnosis - find single cause - treat single cause with prescription medicines etc. They are lost when they get into nutrition and absorption but they will still usually act like they know exactly what they're talking about.
I had a minor skin infection issue during my deficiency period, I ignored it because it was minor , just an itchy spot. Didnt even report it. But the doctor noticed it during a physical, diagnosed it correctly as a fungal infection, prescribed an antibiotic which cleared it up in a few weeks. Single symptom, single cause, single treatment. Very simple. The kind of minor problem doctors love to deal with and that modern medicine is setup excellently to handle.
Yet all this time I was taking 1/30 the amount of necessary B12 on their advice. And they thought nothing of this despite mounting and increasingly severe symptoms. Total disconnect between whats actually important to health - the minor annoyance of an itchy spot versus the complete physical and mental disaster of a B12 deficiency. But yet, this physician perfectly diagnosed and treated this minor issue while a problem of enormously greater importance worsened and unrecoverable damage continued based on their advice. Its total madness.
The problem is not solely ignorance, it is when it is combined with arrogance, then you have a situation where the person is arrogant that they know something but their knowledge of it is so poor that they dont even realize how much they dont know. In a professional capacity where health and lives are at stake this is a lethal combination. I was at the receiving end of this as were many others.
When I hire for a position, if I detect both these traits in a candidate it is a massive red flag. Ignorance can be corrected with good teaching and knowledge. An arrogant but true expert is annoying but can still provide useful information . The combination however is lethal since the person wont be receptive to learning new information due to their arrogance, but will confidently provide false information to clients without any doubts. This is a devastating combination of flaws.
oh wow you are so right! I relate so much i went to the GP about my B12 and she noticed i also had a fungal infection and helped solved that problem very easily and readily, whilst simultaneously palming me off with merely 1 injection every 4 weeks for 12 weeks, regardless of the guidelines and severity of my symptoms. Its actually quite shocking the level of incompetence in health to deal with this issue, despite how many experts (probably all suffering themselves from PA or b12 malabsorption fuelled by the lack of resources to go into research themselves) tell them what is needed. Yet still its not taken seriously. Its called PA cause it kills you, they give us enough to not die. I genuinely felt like i was dying a slow and painful death at the age of 28. I dealt with 3 drs and 2 of them refused to listen to me. The 3rd listened to me, but had less knowledge that i expect. Anyway, what is to be done, take it into our own hands.
Its intimidating at first but I decided to largely take my health and nutrition into my own hands. It doesnt meant I won't go to a GP when I have an issue, get regular check-ups or blood tests, but I don't have any expectations anymore that if something serious happens to me, that they will be any use. I do what I can to make sure that is much less likely to happen in the future. Of course, accidents can happen and illness can strike anyone but I take every step I can now everyday to try and make it less likely that I will need to interact with that system except for check-ups, tests to keep an eye on things etc.
Agree wholeheartedly. My initial nerve issues didn't progress slowly but just WHAM! one day the entire right side of my body went completely numb. from my the top of my head to my toes. That is ultimately what started me down the path of my PA diagnosis. And what Technoid said is correct as I started my B12 replenishment therapy injections and my nerves began to wake up it was very painful. It was like I had a thousand minions stabbing me with ice picks. I don't even remember how long it took to heal from that but it was months and maybe a couple years for what was going to heal to heal. Now I have some residual numbness in my right hand and right foot but nothing I can't live with. So, yes, it get's worse at first but that pain is a good thing as your nerves are recovering.
I would make sure it is a B12 issue by getting tested for other things. I was taking shots once per month, but my feet start tingling again after awhile so I started taking them every 3 weeks and that works better for me. I was OK on supplements (large daily doeses) for several years, but eventually reached the point where my feet were a mess and that is when I started on the shots.
Yeah, I have had recent bloods and everything is normal so that's really good. The neuro stuff started and was diagnosed as b12 deficiency and many symptoms went away, the last one to fix is my nerves so I'm confident it is this. I'm not sure what else it could be, but I am being referred for nerve conduction tests so hopefully get some more info
"I have had recent bloods and everything is normal so that's really good."
Have you checked the results yourself?
I was told results were all normal in past on several occasiona and when I got access or copies of them I found abnormal and borderine results. These days I don't accept being told everything is normal unless I have a copy of results in my hand or on a screen.
Sadly this is a very familiar story. Your dr is entirely ignorant - like so many.
You need many more B12 jabs - especially with neurological symptoms.
B12 jabs are harmless and cheap. Your GP has a duty to treat your neuro symptoms.
B12 deficiency - with or without pernicious anemia - is equally dangerous.
All the tests involved with b12 deficiency are subjective and not very reliable.
I had to fight (in spite of hardly being able to do anything except lay on the sofa all day) eventually got 3 jabs a week for about 9 weeks then one jab every 3 weeks for 3 years. My neuro symptoms have at last gone and my brain is functioning again. I did tell my dr that it would cost the N H S a lot more to keep sending out ambulances when I fell over, got lost, and got "pseudo" dementia etc. etc.
Good luck - it's not too late to get rid of those frightening neurological symptoms if you act quickly.
Wow that is so scary - i was collapsing too. I collapsed 5 times in 1 week and the dr blamed my mental health conditions. Insulting isn't it. I'm glad you finally got treated seriously. In my case I'm not sure I will get taken seriously at all. Hope you're on the mend
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B12 deficiency. How long before permanent nerve damage is done?
Self injecting and toxicity ??
